4 months post op and feel like the op didn't work for me :(

Posted , 7 users are following.

Hi,

So I'm four months post op and have had a roller coaster of an experience. My ufe was on June 14 and four 5 -6 weeks I was in pain.

The first weeks was unbearable, the second week was excruciating, the 3-5 weeks was heavy cramps and the 6 week was tolerable cramps. For four months I have not had a period and just recently had one that started 7 days ago and still going sad (I thought I had one last month, but was so minimal I was unsure if it was or not). And I also have been discharging brown substance daily for the last four months. When this cycle came, it came full on, heavy bleeding where I have to change every hour, excruciating pain where I'm back on pain killers, lower back hurts, crying myself to sleep, feels like the first two weeks post operative days. Tummy is still large. I have an mri booked for next Friday and I'll update them and my gyno so hopefully I have a solution. Had anyone else been in this situation? For reference I starred out with a 17cm fibroid and two months post op still was 17 cm so we will see if there was any progress next week. They compared me to a 7-8 month pregnancy belly. Thanks in advance for all your support

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9 Replies

  • Posted

    Hi Baby bear,

    I am sorry to hear that your UFE did not workout too good. I had

    mine in April 2016 and it just been confirmed as a failure. I am

    now in more pain then before the procedure. Prior to my UFE

    I struggled with heavy periods, large belly and pressure on my

    bladder. I now have pressure on my bowels and lower back. I

    also have huge hemmerhoid due to my messed up bowels.

    Although my belly has shrunk I actually feel more pregnant with

    these symptoms and my periods are like out of a horror film.

    My Fibroid was 9cm (3-4monts pregnancy) so nowhere as big

    as yours but has only shrunk 1cm.

    As I have no desire to have any more children and I never want

    another fibroid again, I am going for a hysterectomy.

    I have an appointment with gynae at the end of next month to

    discuss which type of hysterectomy I want. I have to have

    sleeping tablets and nerve blockers as I am in pain every day.

    I feel for you I really do, you are not alone though. I have read

    on many sites that the bigger the fibroid and the younger you

    are the least likely it is to work.

    I have found this site a big comfort knowing I am not going

    through this hell on my own, I hope you do too. Let us know how

    you get on.

    Big hugs 💜😘😘

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    • Posted

      Hi Kelly I had UFE done 18jan 2016 for a 10cm Fibroid. Mine has also failed although it shrunk to 7cm the Heavy flooding has returned And i still look pregant. I will be at Gynocology in Jan 2017 as it will then be 12 months post op. I wanted to ask you why you opted for Hysterectomy cos I want a Myomectomy so I wondered if you was offered one by Gynocology or if they refused. Hope it all goes well for you.
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    • Posted

      Hi Kelly

      My apologies about the late reply.  I wanted to reply sooner but was in a bit of a situation.  And here it goes...

      On my last post I mentioned I had my first cycle in four months post UFE op and was on day seven.  Well...on day 10 of my cycle I FLOODED and saturated three pads in five minutes and had to double up on pads and was literally flooding to the point where cycle leaked down my legs and couldn't go walk to the bathroom from my bedroom without leaving a trail.  That night on October 23rd, I ended up in emergency with a high fever and after doing blood work had a high white blood cell count.  I was admitted to the hospital and remained in the hospital for a total of 12 days.  I had multiple tests completed and for the first week the doctors said my body was fighting an infection and couldn't pinpoint where the infection was coming from.  Eventually after being put on antibiotics and pain medications the cycle would slow down but not stop.  I was told my embolization had bloocked the blood supply and oxygen supply to the fibroid but also lead to necrotic tissue that had started to build on bad bacteria in my uterus, therefore and infection started and the pieces of fibroid i had expelled created a raw spot and when I was on my cycle that would not stop lead to the fibroid bleeding.  While at the hospital, I had daily fevers and my WBC count was increasing and my hemoglobin was slowly dropping.  The gyno team was amazing and took over my case and the end result after much consideration and thought and discussions with all the doctors and the many tests (MRI, chest xray, blood test daily, culture tests and goes on and on...) the final restult was to eliminate the source.  On day nine at the hospital, I had a total abdominal hysterectomy and they removed my fallopian tubes, my uterus which was meshed in with the fibroid and most of my cervix.  they couldn't remove all of my cervix because the large fibroid had changed the anatomy of the cervix so I will still have to do annual paps exams.  I am now 18 days post op.  the pain management has been taken care of very well however I do have a seroma, sac full of fluid that has been draining daily sice 5 days post op.  Since the removal of the staples, and only using steri strips I have a minor splitting of the incision and now have to go to the wound clinic daily to get it packed.  

      With many tears and being on a very emotional rollercoaster ride during my stay at the hospital to make such a big decision, I feel like this was a personal best decision for myself to make to avoid the horrible painful feeling of the post ufe op that i had.  while on my cycle i was in major pain for two weeks and felt like my uterus was trying to have contractions to try and expell the fibroid.  Now i feel pain free and just now need to deal with the closure of the incision and aside from the healing process feel the quality of life improving.  the amount of times I have to void over night has decreased from 12 times to twice a night and there is no pressure of course, my bowel movements went from constipation to the point where i can empty completely.  my legs don't hurt, no more periods, no fullness.  no nothing.  I feel stronger by the day and can't wait for a better future!!!

      If you have any questions about the procedure, please ask away and thank you for your support!!!

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  • Posted

    So sorry to hear that, sounds like you are feeling really rubbish. It is horrible when pain interferes with your quality of life. Don't lose hope! Perhaps if the MRI confirma it is still there, you can get a surgical removal of that shockingly big fibroid (if that is something you are comfortable doing). I don't know where you live or your age, or whether you want to preserve fertility but hopefully you get an appropriate solution that suits you.

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    • Posted

      Hi Claudia

      On my last post I mentioned I had my first cycle in four months post UFE op and was on day seven. Well...on day 10 of my cycle I FLOODED and saturated three pads in five minutes and had to double up on pads and was literally flooding to the point where cycle leaked down my legs and couldn't go walk to the bathroom from my bedroom without leaving a trail. That night on October 23rd, I ended up in emergency with a high fever and after doing blood work had a high white blood cell count. I was admitted to the hospital and remained in the hospital for a total of 12 days. I had multiple tests completed and for the first week the doctors said my body was fighting an infection and couldn't pinpoint where the infection was coming from. Eventually after being put on antibiotics and pain medications the cycle would slow down but not stop. I was told my embolization had bloocked the blood supply and oxygen supply to the fibroid but also lead to necrotic tissue that had started to build on bad bacteria in my uterus, therefore and infection started and the pieces of fibroid i had expelled created a raw spot and when I was on my cycle that would not stop lead to the fibroid bleeding. While at the hospital, I had daily fevers and my WBC count was increasing and my hemoglobin was slowly dropping. The gyno team was amazing and took over my case and the end result after much consideration and thought and discussions with all the doctors and the many tests (MRI, chest xray, blood test daily, culture tests and goes on and on...) the final restult was to eliminate the source. On day nine at the hospital, I had a total abdominal hysterectomy and they removed my fallopian tubes, my uterus which was meshed in with the fibroid and most of my cervix. they couldn't remove all of my cervix because the large fibroid had changed the anatomy of the cervix so I will still have to do annual paps exams. I am now 18 days post op. the pain management has been taken care of very well however I do have a seroma, sac full of fluid that has been draining daily sice 5 days post op. Since the removal of the staples, and only using steri strips I have a minor splitting of the incision and now have to go to the wound clinic daily to get it packed.

      With many tears and being on a very emotional rollercoaster ride during my stay at the hospital to make such a big decision, I feel like this was a personal best decision for myself to make to avoid the horrible painful feeling of the post ufe op that i had. while on my cycle i was in major pain for two weeks and felt like my uterus was trying to have contractions to try and expell the fibroid. Now i feel pain free and just now need to deal with the closure of the incision and aside from the healing process feel the quality of life improving. the amount of times I have to void over night has decreased from 12 times to twice a night and there is no pressure of course, my bowel movements went from constipation to the point where i can empty completely. my legs don't hurt, no more periods, no fullness. no nothing. I feel stronger by the day and can't wait for a better future!!!

      If you have any questions about the procedure, please ask away and thank you for your support!!!

      Report / Delete Reply
  • Posted

    So so
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  • Posted

    So sorry to hear that you are feeling so bad.

    This is just the worst experience any woman can go through.

    I was due to have a myomectomy last week and although I was very nervous as I had 1 around 7 years ago I just couldn't wait to try and get back to some nomalittle. Burst into tears when they cancelled it at the last minute.

    Was just wondering if you have the option of having just fibroids removed or is it your choice to have a hysterectomy?

    Wish you all the best in what you decide.

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    • Posted

      Hi Shana,

      On my last post I mentioned I had my first cycle in four months post UFE op and was on day seven. Well...on day 10 of my cycle I FLOODED and saturated three pads in five minutes and had to double up on pads and was literally flooding to the point where cycle leaked down my legs and couldn't go walk to the bathroom from my bedroom without leaving a trail. That night on October 23rd, I ended up in emergency with a high fever and after doing blood work had a high white blood cell count. I was admitted to the hospital and remained in the hospital for a total of 12 days. I had multiple tests completed and for the first week the doctors said my body was fighting an infection and couldn't pinpoint where the infection was coming from. Eventually after being put on antibiotics and pain medications the cycle would slow down but not stop. I was told my embolization had bloocked the blood supply and oxygen supply to the fibroid but also lead to necrotic tissue that had started to build on bad bacteria in my uterus, therefore and infection started and the pieces of fibroid i had expelled created a raw spot and when I was on my cycle that would not stop lead to the fibroid bleeding. While at the hospital, I had daily fevers and my WBC count was increasing and my hemoglobin was slowly dropping. The gyno team was amazing and took over my case and the end result after much consideration and thought and discussions with all the doctors and the many tests (MRI, chest xray, blood test daily, culture tests and goes on and on...) the final restult was to eliminate the source. On day nine at the hospital, I had a total abdominal hysterectomy and they removed my fallopian tubes, my uterus which was meshed in with the fibroid and most of my cervix. they couldn't remove all of my cervix because the large fibroid had changed the anatomy of the cervix so I will still have to do annual paps exams. I am now 18 days post op. the pain management has been taken care of very well however I do have a seroma, sac full of fluid that has been draining daily sice 5 days post op. Since the removal of the staples, and only using steri strips I have a minor splitting of the incision and now have to go to the wound clinic daily to get it packed.

      With many tears and being on a very emotional rollercoaster ride during my stay at the hospital to make such a big decision, I feel like this was a personal best decision for myself to make to avoid the horrible painful feeling of the post ufe op that i had. while on my cycle i was in major pain for two weeks and felt like my uterus was trying to have contractions to try and expell the fibroid. Now i feel pain free and just now need to deal with the closure of the incision and aside from the healing process feel the quality of life improving. the amount of times I have to void over night has decreased from 12 times to twice a night and there is no pressure of course, my bowel movements went from constipation to the point where i can empty completely. my legs don't hurt, no more periods, no fullness. no nothing. I feel stronger by the day and can't wait for a better future!!!

      If you have any questions about the procedure, please ask away and thank you for your support!!!

      Report / Delete Reply
  • Posted

    Don't give up yet. I have a high pain tolerance so I can't really relate. But long bloody periods I do know. After my procedure my periods were still erratic and flooding. To months 4 or 5. I'm now going into month 8 and things are not perfect but so much better and my quality of life is much improved. During my actual period I have one day of flooding and maybe 4 days of normal to very light. Then maybe 5 to 7 days of light spotting. And I mean light!! I wear panty liners everyday but most days is unnecessary. Compared to life before, this is a breeze. And it may not last forever but I'll take it for now.

    And some people take up to a year even tho the doctors tell you immediate to 6 months to see a difference.

    Patience is your friend. But I understand. how difficult it is.

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